Experiences

When you have been what you could describe as a successful
highly regarded and rewarded medical doctor, the immediate
realisation that there is something substantially wrong going on
with your brain, puts you in a difficult place. If you are a good
doctor, you immediately realise the severity of your problem, but
at the same time, you know that you are not supposed to diagnose
yourself.

That was my experience when one day I went to work and realised
that numbers did not make any sense to me. Numbers had been, apart
from medicine, my passion in life. They had always made sense to me
even after they were processed with difficult complex models. I was
able to perceive inconsistencies or anomalies rapidly even in
national datasets. Suddenly, I could not think how one plus one
made two, or how much the change needed to be in the coffee shop.
Apart from that, I started feeling extremely tired and was unable
to sleep.

After normal blood testing, I was told that I was likely to have
Chronic Fatigue Syndrome (diagnosis by exclusion). I was referred
to the specialist service and this was apparently confirmed.
Particularly because after one year, one day, I could not make
sense of words when I was reading, watching TV or talking to
people. By the time my brain was processing the first sentence in
seconds to pass to the next one, I had already forgotten what the
first sentence was about. I could not name objects and everything
became “a thingy”. I spoke with my very supportive family about the
possibility of an early Alzheimer’s.

At that time, I was working in Public Health and my trainers
could not understand and definitely were not very sympathetic. They
were different harder times for disabled people. The need for
reasonable adjustments was considered to be an allowance that
should not be available for doctors, as if the world and the
profession was dependant on our all perfect brains and
functions.

My original problems improved progressively, but they never went
back to baseline. I am able to work with numbers again, but I do
not have the extra sensitivity that I had in the past. I have been
told that I suffer of a newly developed dyslexia that affects in
particular my phonological awareness. This has direct influence in
my pronunciation of words in any language.

It was six years after I experienced the first symptoms that I
was diagnosed with a Meningioma. The size of the Meningioma never
explained the symptoms. However, I have other neurological problems
and perhaps one of them, or the effect of the combination has
caused the “unexplainable symptoms”. A neurologist once told me
that I had been really unlucky because I have several neurological
conditions that would rarely happen in the same person.

In 2014, I was told that I required surgery of the still growing
Meningioma because I started experiencing olfactory hallucinations.
The very successful surgical procedure took place at Queen Square
in January 2015. Thanks to my very skilful neurosurgeon and his
team, there were no serious complications and two months after the
procedure I was ready to go back to work. After the surgery, some
of the unexplainable neurological symptoms started fading. The
Neurosurgeon has recently explained to me that it is likely that
the tumour had been causing some level of inflammation in the brain
and in consequence the symptoms that have started to disappear.

I still have other neurological problems, and after the surgery
I started feeling even more tired than before. I am still unable to
drive long distances or time. My swallowing difficulties have
worsened and my speech changed as well. Sometimes I am able to see
a word clearly in my mind and the pronunciation comes from my mouth
with a different composition of sounds. I already was suffering of
lack of phonological awareness, but the changes to my voice box in
structure (I had a endonasal transcribriform procedure), the
constant irritation caused by a fluid of unknown origin, and the
constant clearing of my throat, has made my speech occasionally
unintelligible. This particularly happens when I am stressed or
rushing or I am overthinking what I have to say. The speech and
language therapy has assisted me not only with strategies and
exercises to make my speech more intelligible, but also to improve
my self-esteem and confidence. I require extra preparation for
everything that I need to do and say, particularly on more formal
sessions or exams. In particular, I need reasonable adjustments and
lots of support and understanding to be able to perform at the same
level than my peers.

Because my condition is not immediately obvious to others,
people can be sceptical when I need adjustments. They prefer to
believe that my speech problems are caused by my Mexican origin and
pronunciation.

Moving between placements every six months during my Core
Training meant often contact with Occupational Health. Having to
set up reasonable adjustments so frequently does cause me a fair
amount of stress, and obviously results in discussing confidential
details with lots of different people.

Moving from Public Health into Psychiatry

When I was told that I had a benign brain tumour, the first
thing that came to my mind was relief, not only because perhaps now
I had the explanation for my symptoms, but also because it was not
malign. My grandmother died because of an Astrocytoma.

It is in moments like this that you need to stop and reflect
about your personal and professional life. I could not see myself
practicing a Specialty in which the contact with patients (because
of the way in which it is organised in this country) was rare. At
the end of the day, the patients were the reason for me to become a
medical doctor. After a career break, I made a decision to retrain
in a speciality that was more suitable. I was very fortunate to
secure a locum appointment for service post in Psychiatry and later
a Core Training post.

My working place at Leicestershire Partnership Trust (LPT)

Working as a doctor with a disability, and also with extensive
experience of being a patient has hopefully made me a better, more
compassionate doctor.

It was a God’s blessing to have found a job at Leicestershire
Partnership Trust (LPT) after my career break. I am sure that this
Trust is not unique in terms of its compliance with the
responsibilities associated with the Equality Act. However, having
worked as part of the Equalities team gives me the insight to say
that this Trust has been always in the leading position, investing
time and effort in equality aspects. LPT always moves many extra
miles if this is going to benefit its patients or members of
staff.

The adjustments provided were numerous and they changed over
time depending on my additional needs.

While not everything has always gone perfect when discussing
reasonable adjustments, this is not because of the lack of
policies, information or training. It has been because some human
beings, including doctors may still believe that the medical
profession has been made for the perfect unspoiled people, and
disabled people and reasonable adjustments do not have a place in
the same page as medical training.

LPT heard my concerns when things did not go well, and has acted
upon my complaints when members of staff considered themselves
above the national or international mandates.

My experience at LPT was most of the time more than positive. My
trainers and supervisors have seen above my disability. They have
appreciated the ability behind the disability, and have supported
me to work within the limit and sometimes, when needed, above my
multiple abilities, knowledge and skills. Medical staffing was
brilliant when sorting out problems derived of the complexity of my
needs.

I am grateful and in debt for all the support received.

The Royal College of Psychiatrists

I have passed my entire membership examinations; one before the
brain surgery and three after the surgery.

I do not know what happen with other Medical Royal Colleges or
Faculties at this moment in time, but I am able to say that the
Royal College of Psychiatrists takes its Equality responsibilities
very seriously indeed.

From the moment that I first contacted the person in charge of
the operational aspects of the examinations, I realised how
different this was compared with my previous experiences. The
operations officer was always compassionate, objective, helpful and
effective. At no time I felt that I was a burden to her and the
logistics or the College. In the opposite direction, I always felt
heard, appreciated and helped by the Examinations Unit and all the
Chief Examiners in post during this period.

Most of the members of staff do not know and did not have to
know the particularities of my disability, but they were always
open to the unknown and also keen to assist. I prepared really hard
for my exams; at least as hard as many other trainees or candidates
that have passed the exams. However, I am 100% sure that if it has
not been because of the reasonable adjustments that the Royal
College put in place, I would not have been able to pass the exams,
due to the long lasting substantial disadvantage I am placed due to
my disabilities.

Each single candidate has specific needs, so it is not adequate
to list all the different adjustments that the college put in
place, but I can say that they rebalanced the disadvantage caused
by my disability.

I am not sure how many other members of the college have
undergone brain surgery while in training, but my experience tells
me that it is not an easy enterprise to deal with within a short
period of time without feeling that you are held by a large support
network which includes your family, friends and relatives in
relation to your personal life. In your professional life, you need
an employer as sensitive to equality issues as LPT and a Royal
College that will walk the difficult track next to you, putting in
place the safeguards that will help you to move forward and reach
your dreams regardless of the limitations imposed by a
disability.

The main positive outcome in my case is that I managed to stay
working within a clinical medical role, and have managed to
complete my Core Training and Exams for a specialty that is more
suitable for me in the long term. I will be applying for the next
position soon and hopefully able to finish my training and become a
consultant. If I ever become a consultant, this will be thanks to
the coordinated effort I have been blessed with (LPT, Royal
College, and any future employer) when I made the decision to start
my career in Psychiatry.

Bernard Hart, retired IT Consultant and Magistrate
Member of the Royal College of Psychiatrists Carers Forum

5 August 2015

Guardianship has been a subject the British government has
wrestled with for many years and, as far as I know, found no
satisfactory solution. The key issue for me is: “What happens to a
person with reduced capacity when their primary carer or carers
is/are no longer able to care for them either through death or
incapacity?”

Photograph by Örjan Lindén

There is one school of thought that says the government then has
a responsibility for the health and wellbeing of that person.
Unfortunately, there is little or no evidence of the government
assuming that responsibility under current legislation or
guidelines. It is, therefore, left to the carer(s) prior to their
incapacitation to make whatever arrangements they can for the
welfare of the person they care for. Okay, so you make a will with
your cared-for as beneficiary. You may set up a trust with trustees
you appoint to administer it to the benefit of your cared-for.
Great! All things being equal, this will probably work if you’ve
appointed the right trustees; people you trust to work in the best
interests of your loved one.

Now, what happens if you, the carer, become disabled. You’ve
accumulated a small amount of money that you hope to leave to your
cared-for when you’re no longer around. Money that is intended to
help him or her with necessities and maybe the odd luxury when
you’re no longer able to. Unfortunately, if your savings exceed the
relatively minimal amount the government allows, you’ll have to pay
for any help you get from statutory agencies such as help with
bathing, dressing, keeping your home clean, and this can amount to
a tidy sum. Depending on how long you need that help – in many
cases, indefinitely or for many years – it will take most, if not
all, of your hard earned savings, the money you’ve worked hard to
put aside for the long term welfare of your cared-for. Everyone
with more than £23,250 has to pay for support. Below that
threshold, they contribute to the cost - with the amount paid based
on means-testing of both savings and income. Those with savings and
capital of between £14,250 and £23,250 have those assets taken into
account when their contribution is assessed. Below £14,250, only a
person's income is considered.

Of course, there are ways round this, like transferring your
savings to your loved ones before you become incapacitated, but
that not only pre-supposes that you will have some time to plan,
but it is also, to say the least, a risky option for many. For one
thing it can leave you without personal resources and your savings
could disappear very quickly if put into the care of somebody who
has little or no experience of managing money for the longer term.
I won’t mention death duties here as this only becomes relevant if
you have a significant amount of money to leave behind.

It has been pointed out to me that The Office of The Public
Guardian does have responsibility for supervising the affairs of
those who do not have the capacity to manage them themselves.
However, if you check the Government’s website in this regard,
you’ll note that it's all very bureaucratic and impersonal. Not a
route I’d be keen to take.

Our current crop of politicians has been waxing lyrical about
the need to support carers for some years now, while at the same
time reducing the amount of money available for their support. I
think it's time we started putting some pressure on legislators to
significantly increase the threshold at which carers become liable
for the cost of their own care and support.